Goodbye 2020

I hope you all had the best Christmas/holiday season you could under the circumstances. We had an okay time, decided to spread it out over a few days with presents on Christmas Day and roast pork on the 28th. I loved all my presents, though I still need to sort some out for those who didn’t have wishlists I could pick from. Sammie came over on Christmas Eve, and after donning full PPE we finally had a hug which was the best present. It had been over a year as I wasn’t well enough when she came over in February then The Event stopped her visiting much through the year.

I’ve still not left my bedroom, but Izzy has promised I can go on the ramp to watch fireworks on New Year’s Eve and I’ll wear full PPE in case the neighbour shows up. The fireworks will be at 6pm instead of midnight because of The Event. Instead I’ve been playing a lot of World of Warcraft Shadowlands, watching TV and films, reading a lot of Wikipedia/Wikitravel/Reddit and also sleeping through migraines (6 in December, which I’m not too happy about).

The Event has had a big impact. I’ve known several people to get Covid-19. Most were only slightly or moderately ill, but one friend is currently in intensive care on a ventilator, and she wasn’t in the shielding group. Even those who weren’t that ill initially are having symptoms long after the initial illness has gone. As my ME was triggered by swine flu we’ve been really careful, and as the rates have increased in our area Izzy has stopped going to local shops at all and only goes out for my medication and exercise when it’s quiet. We’re really grateful she can work from home still and are praying and hoping my friend improves soon, along with all those who are still ill.

Izzy managed to get graphics cards! We bought a new one as Sammie’s main Christmas present, and then she got an upgrade for herself, along with an upgraded CPU and motherboard and a ton of RAM. This means I got what was basically her old machine with my case and hard drives in it. I now have a GTX 1080 which is making World of Warcraft really pretty. She has an RTX 3090 so can do ray tracing and stuff, which I’m slightly jealous of but she can actually make use of that power making games for work. I also managed to convince Izzy to come back to World of Warcraft so she’s been seeing the new zones in all their glory.

Most of our big plans are on hold until we’re vaccinated. We’re both in group 6 for the UK priority list, me for having ME and Izzy for having asthma. As even when there wasn’t a pandemic I didn’t get out much we want Izzy to get it first, though once I have it we can get the carers back in and look into a cleaner again (maybe my brother). Izzy’s been able to do some housework while she’s on holiday from work, but we’re not quite there yet. We have a lot of cardboard boxes to get rid of. Once we’re vaccinated we’ll be able to have Sammie over more often if she wants to which would be awesome. I also owe her and Izzy a trip to a theme park.

My hopes for the last couple of days of the year are to finish reading Because Internet by Gretchen McCulloch, play a bit more World of Warcraft, and see the fireworks tomorrow. I’ll do a seperate post for my goals for next year and a proper review of this one. This is mostly an update post to get back into the habit of writing.

WTF is going on?

So I’m still here. This is mostly good. Still haven’t left my bedroom, but have gotten out of bed (to make a sheet change easier) so that’s something.

My brother Martin came over in August to help sort the kitchen out, as Izzy was too overwhelmed to do it. He did an excellent job, and we wore masks when in the same room and stuff. As it went well he was meant to be coming back to help more, but then his housemate was exposed to The Virus and by the time his result came back negative cases in our local area had exploded again (not helped by the universities restarting) and it felt too high risk. We’re hoping he can come over when things calm down again as he’s better at cleaning and organising than our previous cleaner.

Having the kitchen sorted meant Izzy felt up to doing more in there, so we bought a bread maker and an Instant Pot to make things easier. The home made bread is awesome, though it goes dry very quickly so we need to find a way to keep it fresh for longer in case I’m asleep. We’ve been buying jam from Evesham Goldenberries to go on the bread, and it’s so good. I need Izzy to make more bread as that jam only deserves the best 😛

I’ve mostly been stable. Izzy being around all the time definitely helps me. The only new thing that’s bad is I’m getting motion sick in Minecraft again, which is very frustrating when I want to play Bilbcraft with friends and it’s been updated to the new version. I’ve been playing some World of Warcraft and Vostok Inc. which have been fun. I got the collector’s edition of World of Warcraft: Shadowlands, which is very shiny. Don’t know when the expansion is coming out though 😛

When I’ve been on my tablet I’ve mostly been playing Penguin Isle, The Pocket Arcade (which is made by a certain company Izzy works for… :P) and various Nanogram/Picross games. I’ve been spending less time on Twitter as everything is overwhelming, but friends are good.

Last week Izzy got her flu jab. She was in and out quickly, and it was done by one of the doctors. On Saturday it was my turn. District nurse came out, and we spent about 15 minutes chatting while she filled out paperwork and such. It hurt, but I didn’t go non-verbal or hit her so I’ll call it a success 😛

This week has been recovering from that mostly. For some reason my lower arm has been hurting more than my upper arm, and I’ve had a few days of feeling rotten and needing more anti-emetics and ibuprofen, but today I seem to be back to Danni normal. I’m glad as I’ve been wanting to go on my computer and watch more Hilda on Netflix.

No real plans for the near future, though we’re starting to think about Christmas. We’re looking at graphics cards but struggling to find new ones anywhere. Hopefully that will improve at some point in the next couple of months. I’m wanting to leave my bedroom at some point, but that requires either the living room to be accessible (which is hard for Izzy to do as she’s doing two full time jobs right now) or for it to be safe for me to go outside, when we have a neighbour who won’t keep her distance. We’ll see.

10 Years

Today is 10 years since I started this blog. This means that yesterday Izzy and I celebrated our 10th wedding anniversary. We had a couple of hours of cuddling in my bed while watching cricket, amazing food from our local Korean chicken place, and then I ended up sleeping the rest of the day because I still have severe ME and cuddling is exhausting 😛

The last 10 years have been very different from what we’d have predicted. We didn’t know how ill I’d get, or even that I’d still be ill by now. We moved from Crawcrook (a lovely village) to Gateshead (a decent sized town) once I could no longer manage stairs and needed to be closer to the hospitals. I went from mostly walking with crutches to full time wheelchair use and then nearly completely bed bound and unable to sit upright. Izzy went from being inside all the time to going to a day service, then volunteering for both the day service and a local games developer, then in March getting a full time job with the games company (just in time for lockdown :P). She also took up running and turned out to be pretty good at it. We also both realised we were trans. Over the last few years Izzy has got to know Sammie really well, and now Sammie trusts her when I’m not available to help out, which makes me very happy.

Some things are the same. We both still play World of Warcraft and are obsessed with computers. Penguins are a massive part of our lives, and most of our belongings are purple. We still very much like cuddling each other, and get frustrated when I’m too ill. We both like talking and listening to each other’s special interests, and just being in together while doing our own things.

The original plan was as we had a very small wedding (5 guests), we were going to have a blessing and bigger party for family and friends for our 1st anniversary. As I got more ill, that was postponed until the 5th, then the 10th. At this point, we have no idea when I’ll be well enough, so we’ll worry about it when I’m able to actually manage one, whenever that’ll be. We definitely don’t regret our wedding, especially since we weren’t to know I was going to get so much more ill so quickly. In the meantime, we just spend what time we can together and hope one day I’ll be well enough to see people again 🙂

As for how we’re doing, we’re mostly okay. Still hiding from the world, so not having anyone in and Izzy’s still working from home. I haven’t blogged much as I was badly affected by Mel Baggs’ death, mostly because it shouldn’t have happened. We hadn’t spoken recently, but if it weren’t for hir and Laura Tisoncik creating the Autism Liberation Front in Second Life I wouldn’t have met Izzy, and I’m not sure I’d even be here without them. The world is a much poorer place without Mel, but hir writing and legacy will remain.

Things Feel Weird

I’m doing pretty good for me. Having Johan home all the time means no waiting for urgent care and shorter waits for less urgent care, which means I’m physically doing a bit better. Not being alone in the flat most of the day is great for my anxiety, even though I’m still spending most of my time alone. Unlike most people, I am used to being unable to go out or see friends and family, so a few more months isn’t going to make much of a difference (I last got out of bed on the 29th of December).

Being that little bit better means I can do my favourite things, like play video games and read a bit. I’ve managed to watch Steven Universe The Movie, and the first two episodes of Steven Universe Future. I’ve caught up with YouTube videos I have full notifications turned on for. I’ve had video chats with Sammie, voice chats with Johan and even was in a group chat with other This is True supporters (that last one did mean I slept for most of the next two days, but was fun). I even got my loom bands out and made a strap for when I use utensils and things so they don’t go flying when I spasm (looms hold things together when they get chucked, luckily).

We’ve also had many friends and organisations check we’re okay and offered to help if we needed it. So far it’s fine. Between deliveries and our local shop, we’ve been able to get everything we’ve needed except chicken, and that we can work around. I’m very grateful we’re not forgotten and hope those who do need the help get it.

It feels really weird to be doing well during a global crisis. The reason Johan is home is because people are becoming ill and dying from a virus with no known treatment. People are losing jobs and worse. I saw on Twitter someone being told that instead of getting personal protective equipment for her PAs (impossible to source as a single person right now) she should go in a care home, despite having been exposed to someone with COVID-19 symptoms. Care homes are terrible places for disabled people even in the best of times. This is wrong, just for the need of some face masks.

There are still some struggles. As we’re doing a modified version of shielding for me (because full shielding is impossible if you need personal care and I’m technically not in the extremely vulnerable group, just in the likely to die if there’s not enough medical care available group) the lack of skin contact hand holds (we hold hands while Johan is wearing gloves instead) and hugs is hard. As is knowing I’ll not be seeing Sammie or friends in person for a while, after having plans to do so. Johan is starting to feel cooped up, so we’re trying to figure out the safest way for them to go out (the main risk being our neighbour). It’s also a bit frustrating being well enough to go out for the first time in months but not being able to for reasons outside of my control.

I’m in the middle of setting up some routines based on our current circumstances, as my previous ones were based around my care calls, which we’ve now cancelled (along with the cleaner). I’ve got a list of options for things to do so I spend less time trying to figure them out. I’m working on the best way to prompt Johan to do tasks now their routine has also been messed up, and to replace the prompts from the carers and the cleaner (the better care workers would let us know if things needed doing which helped).

One problem we’ve yet to solve is Johan getting overwhelmed if I ask for two things at once, even if I give an order to do them in. I need to do so as if I don’t, I forget the second thing while the first is being done, and Johan gets frustrated when I realise again 10 minutes or so after they’ve sat back down. I also forget it if I try to type it. I know Johan finds my memory problems one of the hardest parts of my illness to cope with, and this situation makes it really obvious.

I’m frustrated that I can’t be the carer that Johan needs. Johan is frustrated that they struggle with providing some of my care. We’re still doing mostly fine, and not having to travel to work (or volunteering) means Johan has been able to cook more which I appreciate. I just don’t know how I’m meant to feel, and that feels weird.

Self Isolation Update

So it didn’t take long after my last post for things to change. Johan’s races were cancelled, and we decided that putting me in a care home was not a good idea considering it would increase the risks to me and the other residents. Johan is also now working from home, as is everyone else in the office.

Johan still took the days booked off as holiday last week, which was Wednesday and Friday. On Wednesday we spent time together in my room, and they opened my curtain and window for me so I could get some fresh air (I originally wanted to go onto the ramp but we decided that wasn’t the best plan). Unfortunately I forgot to ask to have the curtain put up again, and the extra light in my bedroom caused me to feel horrendous over the weekend. It’s back up and I’m doing a bit better now.

Friday was originally meant to be Johan goes to Kielder day. Instead, it was Johan plays Doom Eternal day. I did get to see them occasionally, but mostly I heard lots of clicky noises from the living room 😛 At some point we want to play the board game Pandemic, as I’ve had it for ages but not opened it yet.

Johan working from home is weird. Having them in the living room all day but not being able to just bug them about little things is weird, especially as they’re usually in a voice or video chat with colleagues so I can’t just yell through. We’re using the same system as when they were in the office, which is using WhatsApp for non important stuff (like funny pictures or tweets I find) and Google Hangouts for urgent stuff (I need some care doing). If it’s super duper important, I’ll yell anyway as the rest of the team knows that Johan is my carer, but hopefully it won’t come to that. (If I can’t yell, then I can use the Google Nest Minis to broadcast a message into the living room, which is also part of my wake up Johan plan on a night time.)

At the moment we still have the care workers still coming in. On top of the normal hand washing and gloves, they’re also wearing aprons now. We’ve told the agency that if/when they start having staffing problems, just let us know and they can cut our calls as Johan is here. It will make things harder for us but a lot of the clients have no-one so they’ll need to prioritise. We’re also considering if it might be safest to cancel the calls anyway, to reduce the chance of me catching the virus from them. We’ll need to check with the council for how that will work with direct payments but we’re not there yet.

Sammie is happy that there’s no school and her exams are cancelled. She was really stressed out about her GCSEs and I was getting worried about her. If her teacher’s assessment is close to her predicted grades she’s got no problems when it comes to doing the college course she’s interested in. We don’t know if her school will be providing any work as they’ve already done the curriculum and were just revising and getting prepared for the exams, but if not then she’s got projects she wants to work on. We’re also playing Minecraft together when we get the chance, and I believe she’s got an island to develop for her animal friends.

The hardest part of being in self isolation is that I won’t get to see Sammie in person for the foreseeable future. We’ll be video chatting as normal, but it’s not the same. This is especially hard as the last time she came over I was pretty ill and we couldn’t have any hugs. I’m also no longer having hugs or hand holds with Johan, and we’re reducing physical contact to the minimum. We go on voice chat when I’m on my puter and they’re not working so we can chat without being in the same room.

Johan is still going out for prescriptions and food, but otherwise is staying in. We did manage to get some baby wipes from Aldi, and I found an unopened bottle of alcohol based hand sanitiser that has technically expired but should still be okay according to what I’ve read online, so I’m now using that.

One of the reasons we’re being so strict about physical contact with me is that the NICE guidelines for critical care with COVID-19 came out. They will be using the Clinical Frailty Scale (pdf) to help inform when critical care is appropriate, as for those with a score of five or higher “there is uncertainty regarding the likely benefit of critical care organ support”. My score is seven or severely frail . Now this doesn’t mean that if I need critical care I definitely won’t get it, but as doctors already massively underestimate my quality of life (I’ve had many that don’t believe me when I say I’m not depressed among other things) and there is likely to be a shortage of ventilators, there’s a good chance that if I get that ill, I’ll be placed on palliative care instead.

As well as trying to avoid me getting ill at all, I’ll also be updating my emergency information sheet to state I want all life saving measures to be taken if required, and make sure that those who might be asked know my wishes. I still think the main risk is less the virus itself and it making my ME worse, as I’ve ended up in hospital before when unable to swallow and it would be even harder now. Unfortunately a couple of online friends have already come down with suspected COVID-19, one of whom is still in hospital. I really hope they’ll be okay. It’s so important for people to stay at home unless necessary, but some people haven’t got that yet.

So on to better stuff. Other than the payback from sensory overload caused by not having my curtain up for a couple of days, I’ve been doing pretty well for me. Lots of computer time, catching up with emails, chatting to Sammie and Johan. I’ve also been looking at the positives that are coming out of this. Everything from the mutual aid groups, people putting rainbows in their windows for kids to spot when they’re out on walks, individuals helping out those in need, and even companies giving free drinks to those who have to work.

For this week, I’m hoping to play more World of Warcraft and Minecraft, maybe read a book, and possibly watch the Steven Universe film. I’m also planning on lots of sleep and rest to keep myself as well as possible, doing my physiotherapy, and chatting to Sammie and Johan. I’ll be on Twitter so I can see penguin and cat pictures and videos. I’m going to set up a routine based around Johan working, especially since I seem to be awake during the day most of the time at the moment. Things may be uncertain right now, but there is still good out there.